There have been many scientific and social changes in the dementia landscape in the five years since the first edition of The Moral Challenge of Alzheimer Disease, but none of these has led yet to a cure. This book, then, is about caring, about assistance in living rather than coercion for death, about dying naturally and comfortably rather than protracting mortality and suffering through technological interventions, and about social responsibilities to achieve that end. Included in this second edition are discussions on artificial nutrition and hydration, the limitations of genetic testing and the emerging symptomatic therapies, and a candid argument for a hospice philosophy of palliative care for the late stages of the disease. Post is less concerned with the science per se of the research advancements than with the social and ethical ingredients which allow or deny people with neurodegeneration, resulting in progressive cognitive and physical impairments, to live dignified and respected lives. He presents a well organized, clearly written, subtly polemical treatise challenging the bias towards hypercognitive values which prioritizes rationality and memory over emotion, relationships and creative expression. Advocating for a culture of dementia care, Post lays out a vision where being with is valued while doing to can be an insult, where people do not have to fear death because they would not have to fear what too often leads to it: abandonment, isolation, a culture that views the old and frail as detritus. In Post’s world, compassion, commitment, respect and loyalty are emphasized, special protections are afforded vulnerable populations and quality of life is given ascendancy over quantity.

Why read this book? For an opportunity to consider a place where attentive listening, compassion, respect and loyalty are valued over intellectual prowess and productive achievements. For an outstandingly lucid argument against assisted suicide and euthanasia only made possible in a morally responsible society where solicitous service is provided for those most vulnerable. Post identifies what needs to be done by a socially and politically responsible society to prevent perceived burden and enable gentle passage into the good night. He deals with issues from diagnostic disclosure to the triad of competency, autonomy and decision-making related to advance directives, living wills and durable powers of attorney. He addresses the ethics of genetics testing in the absence of definitive biomarkers or cures, and queries, though perhaps not strongly enough, the morality of pharmaceutical companies pushing emerging symptomatic treatments in the absence of established evidence of effectiveness. Post provides examples of bioethics in practice. While this book is written for a lay audience, it should be required reading for all health care professionals. Post paints both a clinical and everyday life portrait for the principles of bioethics, effectively interspersing this vision with rich narrative accounts, anecdotal vignettes, from people with dementia and their caregivers.

What went wanting in this book? Post writes for an American audience from an American, decidedly Judeo-Christian, perspective. Some recognition of variations in the experiences and prevalence of dementia among the many different pluralities in the United States and wider afield would have been welcome. A chapter on the societal considerations, debate and new laws relating to euthanasia in the Netherlands would have opened up the discourse to an international stage via a comparative example. This would perhaps have required Post to necessarily engage the sociopolitical implications and limitations of his bioethics: is an ethics of dementia care feasible under the current U.S. social and medical system where the social responsibility for the care of the private citizen is astonishingly (writing from a Canadian perspective) placed within the private sector?

Janice Graham, University of British Columbia

Categories: Philosophical